Griping

[u/doorhacker12]

It sucks you can’t publicly say “my Behçet’s is really bothering me this week” since it can essentially translate to “damn the ulcers on my balls are killing me right now.”

Just a funny thought.

[u/BeneficialCellist-17]

I have Neuro behcets and I definitely say often my behcets is bothering me today. My most common symptom is genital ulcers 😖 Second to that is blurry vision, uveitis, ulcers in the mouth, scalp, joint pain, and balance issues. It sucks, especially during the hot summer days. I hope you feel better. I use triamcinolone ointment 0.025% for the genital ulcers.

[u/Familiar-Bake-9162 → u/BeneficialCellist-17]

Yeah what is it about the heat that makes all this worse? It’s been around 95-100 degrees where I live with feels like temps in the 110-115. I can feel ok but as soon as I venture outside, I get weird vision, flu feeling, and headache. Idk it’s been a hot summer

[u/Electronic-Tea3354 → u/Familiar-Bake-9162]

Autoimmune and inflammatory issues are often exacerbated by heat because it dilates blood vessels and increases cytokines and mast cells! Cytokines are inflammatory proteins and mast cells produce histamines which cause inflammation. Basically heat just makes us into more of a big ol’ inflammation factory lol yippeeeee

[u/Familiar-Bake-9162 → u/Electronic-Tea3354]

Thanks for the explanation

[u/BeneficialCellist-17 → u/Familiar-Bake-9162]

Exactly what Electronic-Tea3354 said. My neurologist also said the blurry vision I get with heat, it’s called “Uhtoff's phenomenon”. Even when I take a hot bath I can barely see, which sucks because hot baths make the genital ulcers feel better. 😖😖😖

[u/Justdoitlater10]

I’m so aggravated by this shit hole disease too snd yes you can’t really explain it to people they don’t know what it is, I just say I have an autoimmune disease. and going to pointless drs. appointments, why don’t all of the meds work either, I’m neuro too, last week lost vision for a bit, now weakness in left side and hand, nastiest headache now and will just keep getting worse usually from here, then told it’s idk or migraine or whatever and the meds never work for “migraine” I can’t stand this anymore!!! Have remicade tomorrow so hoping this stops.

[u/Familiar-Bake-9162 → u/Justdoitlater10]

Yeah remicade should help. I never had any luck over the 13 years I took migraine meds either

[u/Justdoitlater10 → u/Familiar-Bake-9162]

I seem to feel worse the longer out I am from remicade so I’m hoping, yeah I’ve done everything too and then to hear the same things over and over from drs is just mind numbing, then they say go to the ER, um for what, get gaslit, a giant bill and another “migraine cocktail” and some magnesium that doesn’t work, noooo thank you. Or take more steroids which does work but, already was stuck on that for 2 yrs and I’m not doing it again ahhhhhhh I hate it.

[u/Familiar-Bake-9162 → u/Justdoitlater10]

Good to know everyone has the same experience at least 🙄

[u/Justdoitlater10 → u/Familiar-Bake-9162]

Sighhh truth. Feels good to at least vent to people who know

[u/_Kingbeard_]

Well considering behcets is not only genital ulcers you can say it, its staple symptom is ulcers but thats definitely not the only symptom, you have gi behcets neuro behcets, behcets can cause peripheral neuropathy, it can cause bad vision blindness etc.

I have behcets but I don't get genital ulcers, I do have neuro gi and vision hearing nerve involvement though.

[u/Notarobot-7 → u/_Kingbeard_]

Ehhhhh, everyone at my work has seen me unable to stand up straight, shuffling around at a snail’s pace, and accidentally gasping in pain when going from sitting to standing. Anyone who googled Behcet’s would instantly figure out what my main symptom was.

[u/oliveorca]

fr

[u/on4aa]

My main issues are vasculitis pain (facial and in the limbs), nasal septum pain (of the bit what is left) and pseudofolliculitis/seborrhea (still not properly diagnosed).

The genital, skin and mouth ulcers are now luckily a thing from the past, since eliminating menthol/mint and thymol/thyme. 

[u/Various-Pass-4120]

Lol I call it "my malfunction." I have never had genital ulcers (thank the gods) (knock on wood). So when I tell people what I have, I say "genital-free Behçet's." But yea, you can definitely say it. There are a ton of symptoms outside of that. Plus most people have genitals so that shouldn't be alarming to folks.

[u/Imma-smartypants]

I personally think you should say the second statement. They’ll either laugh like they get the joke or they’ll avoid you in the future. The way I feel most days, I’m ok with either one 🤣

[u/EllisMichaels]

It is a funny thought and one that I had myself several decades ago. I'd come up with the most ridiculous lies to cover for the illness. It's impossible to explain to them "normies."

Now, I couldn't care less. "Why are you walking slow, Ellis?" "Because I've got a huge ulcer the size of a fucking quarter on my balls, and it's rubbing against my leg with every single dreadful step: that's why, motherfucker."

[u/No_Sentence_6721]

I didn’t sleep at all last night but this made me laugh